Tag: wheelchairs

I had a pretty nice bottle holder for a bike that fastened onto a little bar on my powerchair, with a velcro strap, but it was not firmly fastened enough and would slew sideways. Then while it was sideways I went through a narrow doorway and scraped it right off, breaking the strap and the doohickey that attaches the strap. I’ve had my eye out for a new one for a couple of weeks.

Today I picked up the perfect thing, a bottle cage holder attaching gizmo, called a Minoura BH100 . It is super perfect – you can change the angle, it clamps on firmly and yet has a quick release. That gives some little bolt holes for fastening on a bottle cage. Perfect as this means I don’t have to try to drill holes in the frame of my chair.

I had two choices of cage, and went for the slightly less sturdy option simply because it seems a little more flexible for my metal travel mug.

Which is also perfect by the way . . . I like these 10 oz Chantal travel mugs. Not plastic, very sturdy, easy to clean, can open it with one hand by pushing the button on top and close it again with the same button so it’s ergonomic and also easy to deal with while driving your chair around.

OK, I realize that means I spent 55 bucks on fancy gear but I love always having hot tea or coffee with me. Nice while taking the bus or doing errands. Saves me buying coffee at times but other times if I’m out and buying a drink I can fill up my travel mug. Very handy!

Other stuff dangling off the chair: I have a “baggolini” that fits perfectly on one of the arms, and can be worn facing inside (I have several inches to spare between me and the arms even on the smallest Model CI – I do wish they had an even smaller narrower size.) This is going to be modified soon to have quick release buckles and better adjustability, because I need it to buckle separately with 2 straps over the arm in different places and it would be nice to be able to easily take it with me. This might benefit from expert help from someone better at sewing than me.

Underneath in the basket thing, which still rattles though I keep trying to add foam and tape to muffle the sound, I have a pouch to carry the charging cord and a spare pen and some duct tape. And also a tiny camera pouch velcroed around a slot in the undercarriage with emergency supplies (money, tampons, handkerchief, inhaler, allergy meds).

The back still puzzles me a bit. The protruding horns to hang backpack on are too shallow to fit the backpack plus shopping bags that they’re realistically going to have. So I’m thinking of trying to make them longer with sugru. The other problem in the back is that the slot for velcro for a cane holder interferes with the backpack strap action. If I have my backpack (or shopping bag or bags) hanging on the back, then put my cane through the strap, then need to get the backpack or bags off again, they get all tangled up. Ideally I’d like the cane to slot securely (while folded) just under the seat so I can reach down to grab it instead of reaching behind.

A really nice day. I worked on my game nearly all day and the time just flew. I’m feeling deeply obsessed! Danny is obsessed with Lisp and Scheme so we are just quietly muttering to ourselves like toddlers doing parallel play.

Yatima took me swimming at the JCC and I did some real laps. First time in a long time too. It’s good going with someone else, it’s just more motivating and feels like nice social time rather than a boring lonely chore. The JCC is pretty nice, especially the locker room which has a sauna and steam room. I steamed, then saunaed. Sauna is my favorite, getting into a sort of dead horse pose with my legs going up the wall, feels great on my ankles.

Then Danny and I went off to Biergarten to hang out with friends and I let all the kids (maybe 8-11 year olds? ) try my powerchair and they were all taking turns zooming around (the bold ones) or cautiously spinning on speed 1 (the shyer ones) It’s fun to see how their faces light up and they are like OMG I’M DRIVING! I’M A ROBOT! WHEEEEE! at 4 miles an hour, which is pretty much how I feel in the chair as well. They were going around the little park there on Octavia and even took it over to get ice cream. Anyway, I thought it was super fun (always have) and it is sort of normalizing disability & mobility stuff and they’re not going to harm anything… they were reasonably cautious and didn’t run anyone over. Really… is there anything nicer than the feeling of indulging children, especially when it is a crowd of benevolent adults looking on all sharing that feeling.

Then Cory taught me a 1 minute physical therapy exercise to detach your nerve fibers from the fascia or something like that, sounds great, fucking bring it because my leg nerve is horrible. Fuck a fascia, fuck a leg nerve, fuck a sciatica, etc. Also every tendon. So we did a weird little leg kicking ankle flexing dance sitting on the picnic table with me going Ow! fuck! ow!!!!! and then notching down my flexing ambitions even for the 1 minute thing. I will be giving it a try (adding it to my pantheon of other one minute exercises which I can invoke while feeling restless or painful). Cannot tell if it just helped or if the buzzing feeling now is OMINOUS and means doom. Always hard to correlate but time will tell.

Home again to deeply contemplate how I can modify the “implicitly pass through other barriers rule” so that my wheelchairs and elevators in the game work together correctly. Danny is in the process of maybe realizing that using gnu stow may do what he was about to write in Lisp. He sounds a little sad about this.

On the bus on the way home I was chatting with a guy in the front of the bus with me (also in a powerchair) and we were like both eyeing each others gear. He and his friend were from Ireland. Then he was like do you like chocolate? Being kind of high (I wasn’t while I was at the bar, but then, figured why not make the bus ride more tolerable…Vape in my pocket…. what the heck) I was like “Oh ummm well yeah, why, is my face covered in ice cream because I was actually just eating chocolate ice cream”. No it was not but he gave me a fancy chocolate bar from Dandelion. As pickup lines go this is a pretty good one and I did not know how to refuse the badass chocolate bar. I mean. Also, he complimented my sexy wheels and told me to share the chocolate with someone I love and I was like Um like maybe my husband who is sitting right there LOL. Now I have this awesome chocolate and we need to be friends but I was too stoned to do anything clever like exchange social media names or whatever, instead, staring at the chocolate bar like a doofus and mumbling. The end!

Oh but one more thing. This flyer from yesterday’ event for Public Domain Day at the Internet Archive, of things created in 1923 newly (re)entering the public domain. It’s a nicely printed large yellow poster or broadsheet by queer.archive.work, with a photo of a sculpture by Nancy Elizabeth Prophet, with a poem by Jean Toomer handwritten over it:

Within this black hive to-night
There swarm a million bees;
Bees passing in and out the moon,
Bees escaping out the moon,
Bees returning through the moon,
Silver bees intently buzzing,
Silver honey dripping from the swarm of bees
Earth is a waxen cell of the world comb,
And I, a drone,
Lying on my back,
Lipping honey,
Getting drunk with that silver honey,
Wish that I might fly out past the moon
And curl forever in some far-off farmyard flower.

Going home tonight down Guerrero from the NERT training, I paused on the sidewalk as a couple of cars were coming out of the driveway by Mitchell’s Ice Cream. One pulled out onto Guerrero and the other started to inch out. I was waiting for them both to leave before crossing the driveway in the dark. The second car’s driver noticed me and motioned for me to cross in front of him. But, he was pulled up so far that to get by I would have had to go on the uncomfortably angled part of the driveway as it went down into the street.

So I waved him on, smiling and nodding as if to say thanks for the thought but no… and waited. There was no traffic at all at 9:30pm. So he could just go and be done with it.

He shook his head and started to back up his car a little bit, maybe a foot or so, but it still wasn’t really enough and I decided what I usually do, which is: do I want to wait 10 seconds for this car to move along, or do I want to put myself in front of a 2 ton death machine in the dark when someone could come along and rear end it, etc? I mean, why bother? Am I in a hurry? No and I’m even comfortably sitting down in my nice powerchair.

So I shook my head and waved at the guy again and said “It’s ok I’ll just go after you” and he shook HIS head and started to roll down the window and told me to go on and I said “No I really don’t have any interest in being in front of your vehicle I’ll just go after you go.” He looked angry and started to roll forward while still telling me I should go! As he pulled out into the street he yelled “BITCH!”

Yeah that guy’s heart was definitely in the right place! He was so kind! So charitable! So thoughtful! Too bad his head was up his own ass!

Considering some decorations for the side panels of my Model CI. It strikes me that a Dalek arm weapon would fit perfectly on the side panel. Then the other side could have round designs to fit the theme. But I would like it to be the super elaborate gunstick from the latest episode, Resolution.

I was going to the bus stop yesterday, on a wide sidewalk on Mission, and I passed a couple who were standing by the bus stop bench about to sit down. I was hugging the wall by the pizza place and nail shop and about to turn to wait for the bus just a little ways down from the bus bench. So, I was something like 8-10 feet away from the couple.

The woman looked up as I passed and said “OH!!! Sorry!!!! I didn’t see you!” and kind of mimed as if she were getting out of my way. This was weird, since she wasn’t in my way, I wasn’t in her way, and there was nothing indicating that I was about to be anywhere near them.

“Uh…” I said, super coherently. “Well, I saw you, so, ok.”

Then I waited for the bus without anything further happening but I could see her weird discomfort. She was still bothered. She kept looking at me and kind of acting agitated. Her “Sorry!” was actually not a sorry but was more like a hostile accusation as if I had done something wrong and actually I was supposed to apologize.

This happens all the time (basically a microaggression). Like what happens when someone exaggeratedly holds a door open for me, and I don’t want them to, and I have to ask them to move out of the way because they think they’re holding the door open but they are literally blocking my path through the doorway and I don’t want to run them over. Or even if i can get by, I don’t want to put my face in their armpit.

People doing this kind of thing aren’t helping — they get angry if you don’t respond “correctly”, and then it becomes clear that they started out angry with their bogus offer of help. They are full of resentment and are uncomfortable with my presence and they want me to behave in a way that is apologizing for my presence.

Once you’ve experienced this multiple times a day every day, as you are just minding your own business, you will know what I mean.

And, actually, I’m not always so proud, I often act in a placating manner to make other people comfortable, especially in a crowd, while waiting in line, on the bus, and so on, because honestly it just makes thing easier. For example I normally feel like I am “supposed to” thank the bus driver at least 6 times while getting on and off the damn bus, once at every stage of the interaction like, they see me and start to lower the ramp or lift, they then offer help of various kinds or do stuff, or they give me unneeded (bad) advice or warnings, and I have to acknowledge it and I try to be polite. Probably, y’all get on and off a bus with maybe one “thanks” if you exit at the front but that is not my experience.

So, back to our story.

Time passes. I sit at the front of the bus playing Pokémon, and everything is remarkably peaceful for a middle of the day ride on the 49 bus. The driver remembers I’m there and also, I remembered to push the “ramp please” button well ahead of time and there is only one guy in front of me who is kind of trapped and has to get off the bus to let me off by the ramp, but the driver still yelled at the top of her lungs, “WHEELCHAIR COMING OFF WATCH YOUR FEET I SAID WHEEEEEEEEELCHAIR COMING OFF” I thanked the driver and said have a nice day. While the yelling is often unnecessary and unpleasant it does get the job done. The thing is I can say “excuse me” or “con permiso” myself to the people who I need to get by who are usually looking right at me anyway and can tell I am intending to get off the bus and can see perfectly well what needs to happen.

OK so, now I’m off the bus and it’s an even wider sidewalk than on Mission where I started. The sidewalk is at least 15 feet across. I suddenly realize that same couple who were at the bus stop with me had gotten off at the back of the bus and were on the sidewalk, again near the curb while I was on the far right side of the sidewalk by the buildings. The woman fidgeted around (not sure how to describe this – but it’s like someone doing a lot of “pay attention to me!” body language like they are about to speak to you – as if awkwardly trying to get the attention of a waiter including being frustrated at not already having that attention). And she did a little laugh and said “Oh!!!! I’ll TRY not to get in your WAY this time!!” and mimed “getting out of my way” again even though I was nowhere near her and not aimed anywhere near her.

It was so irritating!

I said “You weren’t in my way before and you’re not in my way now” and stared at her with what was probably the rudest face possible of incredulousness as if a cartoon though balloon that said “You’re an idiot” was floating over my head.

“Gaaaaah! I was JUST JOKING!” she said huffily…. making a little scoffing noise. Her husband stood there looking awkward and probably wishing he could sink into the ground with embarrassment.

I did not behave with the proper level of humility for this beeyatch to accept my presence on the public sidewalk!

I beetled uphill at a goodly clip, my maximum 5 miles per hour, wishing I were a goddamn rocketship to get away from this rude person even faster!

Lady… Let me just be clear…. Madam Fussypants, stick-up-your-butt, REI-clothing-wearing-probably-a-unitarian-white-lady-who-loves-calling-the-cops lady from my neighborhood…..I can snap judge you too! (Thusly.) I dunno what your deal is but you want me to perform some sort of role here for you that I am unwilling to perform!

I am notorious for chatting in a friendly way with total strangers on the street but she was such a jerkface that instead she got my “fuck off” attitude and nearly got me to stop dead in my tracks and pop off in an enormous harangue that would not have helped her obvious feeling of discomfort with my MERE PRESENCE IN THE PUBLIC WORLD.

Whatever demon she is wrestling with, whatever fear of disability…. I wish she would go deal with it in therapy and stop letting it hang out all over the sidewalk. I can’t be the only wheelchair user she ever sees in this town especially if she takes the goddamn 49 bus! What is her problem!

Warcross continues to deliver the goods! I love this book. The gamer/hacker heroine in her ripped up jeans and flannel shirt has now gone through the first draft for the Great Games or whatever they are called, and was picked first to be on the Phoenix Riders team even though she is a lowly level 28. The captain of her team, Asher Wing, is a wheelchair user, which made me instantly happy. I was trying to figure out from the description what kind of chair he had and I am thinking powerchair since his headrest was mentioned. Another named character on an opposing team was a former Paralympian.

Scenes of clever hacking… loving descriptions of leaping around and fighting in the Game . . . And she has moved from her first swanky hotel room to some sort of team training mansion where she has a suite with a rooftop patio with her own private infinity pool.

They have also been to a great party at a disco which was seamlessly wheelchair accessible with great augmented reality. There are so many adorable details like that there is a (female) character named Hamilton.

I also dig that we see more of Emika’s motivation and backstory for the high school hack that got her arrested.

This is like the perfect antidote for the boring sexist barfbag that was Ready Player One. It’s assuaging my soul!

More early impressions of the Whill Model-CI. I took the J MUNI train to Dolores Park yesterday and it was pretty easy to do everything. I’m getting used to joystick driving, feeling more confident there.

The new MUNI cars are spiffy – clean and sparkly even. The large front wheels of the Model CI were great going over the gap between platform and train. In my Travelscoot I had to gun it at top speed to jump the gap. I especially like the new accessible button placement for the front of the train car. You can reach it whether you have the seats flipped up or not (while the old style cars have the button under the seats — you can’t get to it if you’re actually sitting on the seat, and have to yell to the driver instead.) The bigger windows on the car were great.

(My ride home was also fine, old style train car, more crowded, but not hella crowded, and people moved aside for me. I did not run into anyone. Or, if I did, I then ate their souls and brain-wiped every witness so it’s more or less like it never happened.)

No problems navigating around the cafe. I practiced a few times at pulling the chair up to the table with the arms half-raised. If you have an iphone I think you can raise the arms, then steer the chair with your phone, but the remote steering doesn’t work from android phones yet. It worked ok to raise the arms a little, pull forward, then turn off the chair and pull the arms further back.

Then I zoomed around Dolores Park for a while. By this time I was in “sport” mode.
Eco mode – the highest speed is limited. Ignore it
Normal mode – high speed (setting 4) is 5mph. setting 3 is maybe 3mph
Sport mode – high speed is still 5mph. Setting 3 is 4 mph or so.

I didn’t notice any other differences between these settings.

OK so here’s the buzzkill moment – I was zooming down a long glorious hill on the highest speed and then – the chair downshifted on me! Slowed to a bumpy crawl! When I say to go 5 miles an hour, I mean it! Don’t decide without me! (I missed my train, as well as the fun of going fast downhill). Instead of zooming with the wind in my hair and feeling free, like a cyborg should, I was imagining some grim Authority Figures telling me that it wasn’t safe and I wasn’t allowed and then I imagined myself flipping them off!

You know what I’m going to say!!!!!!!

The motor controller should be hackable!

Or, at the very least, fine grained enough controls on the phone so we can program it to do what we want it to do.

Turbo mode!!!!! 6mph! And no sad, draggy-ass downhill downshift!

I’m not the first person to say this and I won’t be the last!

The battery was at 75% when I got home, seems fair enough but it depleted faster than I thought it would (it was not all THAT much zooming around the park.)

Picked up groceries today in pouring rain on an even steeper hill with leaves everywhere on the sidewalk. Also fine. I hung two bags off the back of the chair and had another heavier back on the footplate between my feet. It’s now feeling routine to switch to speed 2 when I go into a doorway. And I feel more at home on day 3 of driving around – it has started to feel like second nature.

I took the Whill-CI to do some errands today. Here are my first impressions.

Driving with a joystick is getting easier. I still have the (wrong) impulse to push harder to go faster.

Definitely enjoying the extra speed and the comfortable seating.

The wobbly wheel feeling is still there. It seems to be the way the front wheels sometimes hit a sidewalk crack (one in parallel to the wheels, not the ones perpendicular). Small changes in slope also make a big difference in pulling the front wheels in one direction or the other.

Notching down the speed when going through a doorway or when in line worked OK for me. Opening doors is harder than it is in the TravelScoot, and I’m wider, so there’s less room for error. Definitely appreciated door-opening buttons today (automatic door at Walgreens, door button at Pinhole Coffee)

I am seated lower down than on the travelscoot, and can’t reach most payment systems in shops and cafes.

People look past me more, not even glancing up, like they are embarrassed. They cut in front of me in line automatically and try to push past me in a situation where they could have gone a different way, said excuse me, or expected a standing person to move aside. That’s not new, but it seemed worse today. It may be partly from the height difference.

I feel a bit odd not having something in front of me, curiously vulnerable.

But cool, at the same time, from my extra speed and my casual leaning back posture.

I do miss the unicorn horn and my decorations on the TravelScoot. Thinking now about how to decorate the CI to be a little sillier. Not quite ready to plaster it with random stickers…

Backpack straps work pretty well. It is a little harder to shop and put things in a bag when I don’t have front handlebars to hang a bag on. The under-seat basket is too rattly and loud for everyday use, so I took it off. I may try to get someone to make a canvas one.

I went to the dispensary, where the bouncer complimented my wheels; Walgreens to pick up stuff at the pharmacy; a cafe to have a pastry and coffee and work a bit (pulling up the arms of the chair to sit at the table, as they do so neatly in the promotional videos!), and up a long steep hill to Pinhole to pick up some ground decaf and the butcher shop for fish for tonight and turkey for the holiday. No complaints on the hill so far.

Tomorrow I’ll try riding the J train (which should be not too crowded), going to a different cafe to work and have lunch with friends. Wednesday I may try the bus. (The bus feels daunting so I want more practice before trying to maneuver in such a tight space where other people can be very tense about it.)

I went about a mile and a half total — the battery went from 97% to 87%.

Still loving my TravelScoot over here but I am excitedly waiting for delivery of a Whill-Ci powerchair.

It seems relatively lightweight, enough so that in a pinch, I could take it apart and with help get it into the trunk of a cab. We’ll see how I do on the bus.

For everyday around my neighborhood, I hope it will increase the range I’m comfortable going, and that I will still be able to maneuver in small space. I used to go without too much worry to, say, 24th street (1 mile) or to Noisebridge (more like a mile and a half). The last couple of years that seems harder to me, and I tend to take the bus instead. Either I just have more trouble sitting upright that long without back support on the scooter, or, the jolting of pavement is too much, or both. Hoping the CI will help with that.

I tried it out at the Abilities Expo and liked it.

My fears are: What if it just isn’t that comfy for city trips of a mile or two? What if it is harder for me to deal with on the bus or on crowded buses? It will be harder for me to decide to take a cab by myself, without someone with me who is willing to take it apart and shovel it into a cab.

And last but not least I am afraid it is going to “talk” to me or beep annoyingly. I cannot think of any situation where I want my chair to beep or talk. So, I forgot to ask but I’m hoping the phone app will let me disable or mute that. If not I’ll be investigating how to make it stop by taking it apart.

It’s an expensive experiment. I’ll report back on how it is in daily use!

This week I’ve left the house every day. Something to celebrate as I’ve spent a couple of months at home. Saturday, I was SO excited to go to the DIS2018 Bay Area event.

Danny and I took the bus and BART over to the Ed Roberts Center. This was nice in itself for me because I like taking trains – and at the BART station plaza we caught a few songs from the Cuban music group Orquestra de 24. It was hard to tear away from that, but they are there every Saturday. The crowd there was having a lot of fun.

On to describe the event and then some of my thoughts about it!

The Disability & Intersectionality Summit (DIS) is a biennial one-day conference that centers the experiences and knowledge of multiply marginalized disabled people such as, queer disabled people of color, undocumented transgender disabled people, or formerly incarcerated disabled people among others. This conference serves as a platform to highlight the multiple oppressions that shape the lived experiences of disabled individuals, as told by disabled people, in a setting organized by disabled activists. DIS aims to create dialogue on how our society must address systemic oppressions using an intersectional approach.

Makers Faire: I only had a few minutes for this, but I bought stickers and zines from Danchan – beautiful, cute, healing. The messages conveyed by her art are in a way something I have been feeling the lack of, so I was instantly just so happy – this is hard to express. Some of the Stay Home Club things give me a similar feeling but these hit the spot more exactly – to encourage & celebrate love and care from this particular perspective. That it is a radical act to care for ourselves and each other. “Vulnerability” – a person in a hoodie holding their arms in the air with a rainbow above; “Hold Each Other Gently” – hands cupped underneath a box wrapped with caution tape; “Stay Loving Stay Angry” with a dagger through a heart. I also liked (and bought) a flag with a blockprint of a powerchair and “SMASH THE FASH” from FatLibInk folks, and some small prints from Mchhim (I can’t find their info but a sticker that says Your Luxury Is Our Displacement and a flower with the roots exposed).

At another table I picked up a flyer of Sins Invalid’s Access Suggestions for Mobilizations. Sins Invalid also has a very good Access Suggestions for Public Events. I recommend them both. Maybe your organization or event can’t manage all of these things, but the ones you can, you can explicitly SAY that you are planning to provide, in your event information, invites, announcements, and so on. Making that information easy to find, ahead of time, is an important part of access and inclusivity. At least, by providing the info, you’re signaling very clearly, Less Bullshit Than Usual maybe and that you have thought about & worked towards access. The detailed, granular information you provide is part of the accessibility! Basically when I see simply “Wheelchair accessible venue” on an event description, that’s nice, but one, I can never believe it, and two, it doesn’t describe what I need to know.

The first afternoon talk was Resistance & Hope: a dialogue Alice Wong & Stacey Milbern – moderated by Robin (@sexabled). While I was kinda hoping for one sort of discussion, we got another, just as good or better.

Alice opened by describing her fear, pain, and anger from the 2016 elections, and how she reacted by wondering what she could do best to foster resistance and hope. Her work for the Disability Visibility Project & for this anthology to be a source of hope in creativity.

Stacey then talked about finding hope in the midst of despair; part of that is in the imagination, imagining and creating ways for us as disabled people to lead resistance. Specifically, for queer/trans/POC disabled folks to lead. For example, within disability activism and communities, we can imagine, what if this movement was led by people with intellectual disabilities, people with mental illness? Once we imagine that, we expand the boundaries of what is possible.

Alice mentioned something I deeply believe, that the people at the margins know the systems they’re in the best. (An idea I first began to understand from Gloria Anzaldua, in the 80s.) In daily lives, we have to fight and resist for so many things, so that something like having plastic straws or riding public transport is part of our resistance. We are struggling to be in public space, as part of our survival.

I appreciated the fun moment where Stacey described Alice as “futuristic”. She said that you can see organizations, non profits, and so on, scrambling to figure out how to use social media. Alice creating the Disability Visibility Project is a good example of using technology effectively – that’s the futuristicness. (Or, think of her with the telepresence robot at the White House!) Consider, from the constraints under which you operate (this is me not Stacey) what you then make happen. To me, that’s part of what it can mean to lead from the margins and why it can be effective. As an important part of that concept, we must challenge the presumed whiteness of disability be centering people of color in the disability justice movement.

Alice responded to Stacey’s talk of being futuristic by saying she likes to think of herself as an alien cyborg. (Darth Vader is a much misunderstood disabled character.)

Stacey and Alice then turned the discussion to ask the rest of us in the room, What do you resist here in the SF Bay Area? What gives you hope and strength?

I did not always catch who was speaking but did hear, among other things,

* Lily talked about doing the work to create a beloved community
* Brotherhood with neurodivergent men of color who are living on the street, as good resistance work
* Monique talking about struggling with inaccessible bathrooms in the Bay Area and also, that people underestimate the intelligence of others in centers ie, in institutions
* rent
* inaccessible parking
* white supremacy and patriarchy
* categories and labels that block connection to humanity
* ableist public schools
* Sanjay says he resists people who grab him and pray on him in the street and, when ppl say they’re ignorant about disability but they all know someone disabled, they just aren’t listening to or paying attention to their own friends and family
* Reactivity, anger and argumentativeness from someone who says she is trying to educate more patiently on a daily basis
* Academic elitism and snobbery
* Gigi talks about pee in the broken BART elevators and her desire to travel the world. Airlines break our chairs so it’s too risky. Technology and social media give her hope, keep taking pics, report, fight, share.
* Lateef (https://twitter.com/kut2smooth) spoke briefly and passionately about the damage done to us. While I didn’t capture it precisely I had the impression that he had plenty to say that I want to hear. So asked him afterwards for his info – I now see from Lateef’s site that he is a poet too. Poets know! You can buy his book, A Declaration of A Body of Love Poetry – I just did.

I liked how Stacey, Alice, and Robin, Allie taking the mic around, and others, made that space for many people to speak and be heard by everyone in the room. All too brief. Claire made the point at the conference’s closing that this is just a glimpse of each other and we can work over the times to come to make sure we keep in touch and nurture the new connections we’ve made.

Along with others at the DIS2018 Bay Area gathering at the Ed Roberts Center I then watched the closing keynote by Anita Cameron via video streaming from the national event. Anita gave a broad overview of her 33 years working with ADAPT. Kinda 33 years winding up to “How do I bring my full self to this fight?” including blackness, being a woman, a lesbian, all my experiences and identities and anger, to the disability justice movement? The “how” is a long answer too long for a talk. It’s ongoing work, it’s more than having a couple of meetings. It was Mike Brown’s horrible murder in Ferguson that sparked Anita’s re-evaluation of her engagement in ADAPT.

I was thinking from that and previous discussion how hard it is to capture the complexities of these answers. Past the basics, what do we actually do? It is a process of gaining wisdom and experience. We can indicate some ways and truths. We can say things that might sound simple, but hold a world of meaning for your thoughts and actions to explore. Expecting a full explanation in this context is like wanting the content of a person’s life to be poured into your brain. (If only!) This is why we have conversations over time, and novels, and movies, it’s why we have stories, because stories are one of the tools, the main tool, we have for this purpose.

Supporting POC-led events and organizations is super important. For me, it is the logical thing to do. It is often impossible to move an existing organization, or, not impossible, but it is definitely never INSTANT, it’s a long term process. There are many inherent pitfalls in that process (like for example tokenizing people). Personally I will never (again – I did at least once) start an organization run by only or even mostly white people, it just does not work for me, it is too flawed, and I don’t like how that unfolds. At best I think once that happens you can partner with other orgs, in a support role.

While I mention POC led organizations let’s name one, I recall someone referring to it and to Talila Lewis on stage yesterday but not exactly what they said. You might have a look at HEARD. A good organization to support. As you may know, when police in this country kill people, over half of their victims are disabled and they are disproportionately disabled people of color. The violence of the prison system is a perpetual horror and we have to fight it on every level.

Helping Educate to Advance the Rights of the Deaf (HEARD), is an all-volunteer nonprofit organization that promotes equal access to legal system for individuals who are deaf and for people with disabilities. HEARD primarily focuses on correcting and preventing deaf wrongful convictions, ending deaf prisoner abuse, decreasing recidivism rates for deaf returned citizens, and on increasing representation of the deaf in the justice, legal and corrections professions. HEARD created and maintains the only national database of deaf, hard of hearing and deaf-blind detainees & prisoners.

On holding space open. While I appreciated aspects of everything people said in the “discussion” part of the afternoon, I also think white folks might stand to listen more, and help to hold space more, rather than taking that space. We all need space to speak. Do I have plenty to say on these subjects? Yes obviously, LOL. Did I need to speak in that process, no I did not. I have massive privilege and opportunity to say what I have to say. That time is better spent literally listening to whatever the people have to say who have the most difficulty. Even that one weird motherfucker who went on about his spiritual wife. OK man we’re holding space for you to be your own glorious weird-ass self. That is also what it is for. Now, I’m sure everyone has their struggles and maybe it is particularly important to hear from Brother Berkeley McWhiterpants about his allyship in the very middle of an event centered on and run by people of color but…. Come ON. (end mild rant)

So I am left with the thoughts of the concrete actions I am taking (and that I support others in doing) For me a part of that is to look around me for people to connect with in my neighborhood. I talk about mobility issues and other struggles with people I just run into. And, I try to balance my financial support between organizations and individuals, who I know and who are strangers to me (which I think is important, as if you only share resources with the people you are already friends with, that just keeps whatever systemic patterns exist in their same patterns.

The structure of the event at the Ed Roberts Center was interesting in itself.

The stage too was a nice thing, though I would have liked it to be a bit higher, it had a broad ramp integrated with it so that it wasn’t a tedious process for folks to get on and off the stage.

I liked the MC-ing by Gigi and Claire Light. Claire led some moments of pausing and breathing, something I’m not great at doing, especially in public (because it means listening to my pain instead of blocking it out, and I don’t want to cry or whatever), but I think it was a good thing for many people in the event and a good idea to make space to ground ourselves. There was also a quiet room available. Towards the end of the afternoon I just got on the floor against a wall and laid down to listen and felt zero worry about other people’s opinions of that. (Something I’ve often done when I’m just that much in pain and tired, but don’t want to go home, I’d rather be able to participate, but others are uncomfortable or it breaks various social rules, and yes that’s why some folks have reclining wheelchairs or maybe I’d be better off staying home but, I can get up and down off the floor and it’s RIGHT THERE.)

I immediately had a wild surge of happiness at being in a crowd, without being crowded and trapped. The space itself was arranged in an open way, with tables spaced widely, and plenty of flexible area for use. Within that space and on the nice smooth floors, others were zipping about, I could hear their motors or appreciate the visual nearly silent, quick motion as they (we) rolled around the room. It was like the pleasure of watching swallows in flight. I thought of specific moments like being at Hamilton Pool near Austin, a limestone sinkhole over a large pool of water, with hollowed out, round cliffs, the mud swallow nests clinging to the cliffs 70 feet overhead and the birds darting in complimentary shapes to the arc of the inverted bowl, not acting together as a flock or a swarm, but each in pursuit of their own invisible goals. (Bugs.) Often, in a crowd, like at a conference hall or hotel, I zip around and, especially if the floor is smooth, I feel something of that pleasure of motion. It means having to be mindful of others in a particular way, that ideally includes my modeling of their ability to predict my motion and trust that I am competent. So, it is rare for me to be in a space like that and feel real joy in motion – It has to be open enough and non chaotic enough to allow for our normal motion not to scare people (whether they have good reason or not to startle and freeze or even leap away, as they do). Maybe the Dyke March and its attempts to hold space open between the main banner and the trolley and sound truck for wheelchair users. What I’m winding up to is that I’m often the only wheelybot in group spaces, so it was a specifically embodied pleasure to be not the only one but more than that, to feel so beautifully comfortable in my own erratic orbits alongside others zooming around. It filled me with joy.

Saw so many friends, met new people, haven’t been so excited about being at a conference in a while.

And, final plug for the Disability Visibility Project. Podcasts, a stream of excellent Facebook posts, Twitter chats on #CripTheVote, #CripLit and other topics. Add them right now to your social media of choice and follow along – you will be sure to learn something & have your world expanded.